Last reply 6 months ago
HSCT updates

I am sure most of ye have seen this tonight or watched the related Panorama program about same.. anyhow just sharing as the results are almost out on the HSCT international trial which includes the UK and they are very encouraging.

http://www.bbc.co.uk/news/health-43435868

Note the trails were RRMS only but as I follow HSCT, I can advise that PPMS is an option and do not be told otherwise, the UK treatment is hard to get through with PPMS but other countries do treat it successfully, if interested in links or data PM me.

Also worth noting, there are other HSCT trials taking place internationally; of note is trials in Israel which are similar to the HSCT trial above but less risky in that they don’t have the hardcore chemo like treatment.

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stumbler
9 months ago

The problem, as far as the NHS is concerned, would be money and resources.

A rapidly progressing case of RRMS would obviously be a priority, The cost of HSCT would be more than covered by the potential annual saving of £50k-ish on DMTs. As well as the potential to avoid the imminent requirement of ongoing care.

In second place would be RRMS patients, where the cost of HSCT would be recouped by not having to pay out for DMTs annually.

Progressive cases would be out of focus. There’s only the cost, with no short term cost benefit/savings.

I’m afraid it will be down to basic economics……….. 😕


rachaellouise
9 months ago

@stumbler – I agree it’s down to money nhs money!
It’s fanatstic but cherry picking people isn’t good . I think it should be open to everyone not just severe cases.
I just wonder wether they will do it privately in the U.K. because it’s only nhs at the moment – yes have to pay but theirs funding pages and raising own capital

Rachael – Hope is in the arisen 😘🙏


aabreu
9 months ago

The FDA in USA has not approved this treatment for MS or other immune disorders. This is why Neurologists don’t offer this to patients.
I’m in the HSCT trial in USA. I hope this trial will help make this treatment a more standard treatment option.


markauty
9 months ago

Does anybody know how you can get onto a trial or who to contact with paying for this privately?


rachaellouise
9 months ago

Hi you can’t get it by paying privately in the U.K. unfortunately . If you wanted that it would be Mexico, Russia and I think India. I know of a few in here who have gone perhaps they would be able to tell you. I think @stumbler will know more than me on who to contact in those countries.

As for getting on a trial not sure over to @stumbler .
As for if the nhs started offering it I think criteria will be very strict and cherry pick people . What do you think stumbler ?

Rachael


seanachai
9 months ago

@markauty – pm me…

you can get it done in Israel, Russia, Mexico etc. not aware of private options in the UK but I can ping a contact who knows most things HSCT…. there are UK and other FB groups running a long time on this with 100/1000s of people, lots of people have received it privately via these channels, Israel and Russia get a lot of positive reviews…

…and now for the good news, its costly though, ranging from $60K upwards.


aabreu
9 months ago

I’m in USA. There is a trial in Chicago. Join this Facebook page and read the files section. There is one in there on how to apply. Many apply and don’t get accepted unfortunately. There is also information about the other places to get the treatment. And places that are stem cell scams.

https://www.facebook.com/groups/burthsct/

In UK, there is a place called Bart’s. I’ve read their web blog that HSCT is offered in some cases. Don’t remember the details.


juliam58
6 months ago

I haven’t been on here for ages but have just seen it mentioned that it’s not possible to get HSCT privately in the U.K. Actually you can! I had mine in March at London Bridge hospital and there are othe places in London and also Sheffield who do it too. It is a lot more expensive than going to Mexico or Russia though but for various reasons it was the right decision for me to have it done in the U.K.
I also know someone in their 60’s who has PPMS and had it done at Hammersmith on the NHS earlier this year…….


vixen
6 months ago

@julian58 would be great for everyone if you could post how it went for you and your friend. I hope you are doing well……

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